Links between Hypothyroidism and Chiari Malformation

[MBentzler]

My twin sister moved from Los Angeles to Colorado and quickly began to gain weight. Within 1 year of residence, she was diagnosed with Type 1 Chiari Malformation. We were 33 at the time and it was suprising her symptoms were not noticed until she moved.  Now that she has had decompression surgery, her weight continues to rise with little help of relief from her surgeon. Is there a link between hypothyroidism and Chiari patients?

[janiskovich]

I just stumbled on this thread and would love more info.  I have a 17 year old daughter who had severe Chiari I and underwent successful decompression surgery at age 11 and lives a totally normal life.  However, she is (like most teens) exhausted all of the time, has experienced rapid weight gain/loss (again, not uncommon for teens) and is always cold.  She also has a mild case of Von Willebrand's (a blood coagulation disorder).

I didn't think anything of her symptoms until yesterday when my 39 year old sister called to explain that she has Hashimoto Thyroidism, which our father has lived with since his mid-30s.  She suggested that we all get tested, as there appears to be a genetic link.

I haven't had my teen tested yet, but am interested to know more about any possible link between Chiari and Hashi's.  Any thoughts are welcome.  I've struggled in the past to find doctors who are willing to listen (it took 4 months of menstrual bleeding at age 13 for them to finally listen and diagnose her Von Willebrand's).

Thanks!

[selmaS]

Hi...I am not an expert and I do have both chiari and hashimoto's......there are several chiarians that have this similar link.I do know chiarians are more likely to have one or more autoimmune conditions.

This convo would be welcomed in our chiari forum....I invite all chiarians and those well informed on thyroid issues to join us.

I will try and set a date for this or we can just start a thread there.....

Sue I do hope you join us in the chiari forum......


"selma"

[ChitChatNine]

We also have a Chiari Community here at MedHelp .. they may be able to help you, too.

http://www.medhelp.org/forums/show/257

[Sue483]

For the last 20 yrs or so, I've been battling hypothyroidism.  I would usually have very high TSH levels and low T3 and T4, and have been on synthroid (varied dosages).  In August 2006, I had a decompression surgery to treat a Chiari I Malformation.  Ever since the surgery in 2006, my TSH levels have dropped down below the normal range.  My last reading was 0.04 uiu/mL (since the surgery, they have been 0.02, 0.27, 0.13, and 0.04).  My T3 levels since the surgery have been 3.6, 3.5, 2.9, and 3.3 pg/mL.  My T4 levels since the surgery have been 1.4, 1.0, 1.1, and 1.2 ng/dl.  My TSH levels have never been so low.  I still have all the classic symptoms of hypothyroidism (fatigue, cold intolerance, weight gain or inability to lose weight, constipation, heavy periods, brittle nails, losing hair, among other symptoms).  My dosage is currently at 125 mcg tabs 2x per day, and I currently weight 179 lbs.  My dosage was increased a few months ago from 100 mcg 2x per day to the current dosage, and I feel somewhat better.  

In the past, I saw an endocrinologist, and he listened to my symptoms, saw the dosage I was on (likely 125 mcg 2x per day), and my weight, and said I was on WAY too high of a dosage for my weight.  He cut the dosage in half, and my TSH skyrocketed off the charts on the high end, and my T3 and T4 levels dropped below the normal range.  I am now under a different endocrinologist's care, and he's listening to my symptoms.  I feel pretty good at 125 mcg 2x per day.  I am still having many of the chronic symptoms though.

What I am wondering is if the Chiari I Malformation may have damaged my pituitary gland.  Chiari I Malformations cause an imbalance in the CSF fluid in the brain and spinal cord area.  For every heart beat one has, this pressure is also exerted on the pituitary gland.  Prior to my surgery in 2006, my TSH levels were way high, then low, then high, then low...never consistent.  Since the surgery, they have been below the low end of the normal range (almost nonexistent), but my T3 and T4 levels seem in the middle of the normal range.

Any suggestions?  I'd like to get rid of some of the chronic symptoms.  When I was in the hospital following the decompression surgery, an internist ran the antibody test for Hashimoto's Disease.  I guess that came up negative.  However, my current endocrinologist says that I have the classic symptoms of Hashimoto's Disease, and my thyroid appears enlarged (but not a goiter).

Any help you can suggest would be appreciated.  Thanks!

[Amanda_in_Maryland]

I firmly believe there is a connection.  I am diagnosed with chiari I.  Also with Occult Tethered Cord Syndrome (which did not show up on MRI).  I was born with a red birthmark on my lower back (an indicator of my tethered cord problem) AND with one on my throat.  At age 28, I developed a sore throat that I have to this day (now 37 years old).  I have many very subtle hypothyroid symptoms.  My TSH reading was 2.73 (normal by lab standards).  BUT, in searching sites like www.thyroid-info.com, I have discovered that in 2005, experts recommended the normal range for TSH be changed to .5 - 2.5.  But here we are in 2008 and doctors/labs are still using the outdated standards.  Go figure...

[ChitChatNine]

Thanks for the e-mail but the system blanks it out.  If you hit my profile on a blue screename you can copy your post filling in the blanks and it should be ok.  Thanks and the best of all to you and pls. feel free to stick around here!

C~

[MBentzler]

Please feel free to have your "MSK" person correspond with me by emailing myrna_marien2003***@****. Since my twins diagnosis and decompression surgery
I've researched many medical postings and can share some insight to the diagnosis based
on my twin's experiences.  I'm continuing research and emailing with a variety of medical
specialists to narrow down my twin's condition.

[Nicki1433]

I asked my nursing instructor, who has a daughter with chiari malformation, this question and she said yes...there is a link between hypothyroid & chiari.  Her daughter has both.

Good luck!

[ChitChatNine]

I wanted to let you know I've read your post .. you may want to post on the Dr. patient forum .. i

http://www.medhelp.org/forums/show/120

It is very odd that the issue of Chiari Malformation came up on this board and on my Kidney Stone MSK (Medullary Sponge Kidney) board that I participate in, too .. a 24yr old women there just posted the other day she has the MSK and most likely has Chiari also (they did an MRI suggesting so) ....... if you'd like to send me a message thru MedHelp I would very much like to put the other young lady in touch with you for advice?  Would that be something you may be interested in?

As far as hypo and Chiari .. it is beyond my scope of any info or knowledge at all .. sorry :(

Good luck and pls let us know what you find out ok?

Cheryl